[Phlox]

I saw my Rheumatologist in April for a scheduled appointment. I had been in a great deal of extra pain for a few weeks and was hobbling around with difficulty - I still am! I have all the normal (for me) Lupus stuff of fever, nausea, extreme fatigue, swollen painful joints, peripheral neuropathy, bright red rashes on my neck, upper chest, palms of hands and soles of my feet etc etc etc.

I came away from the appointment feeling really dejected and lost. I had a few x-rays and was told to increase my Plaq to 400mg from 200mg.
Every time I try to do this I end up with migraines every other day instead of 2 or 3 times a month. I also take Methatrexate 15mg and Pred 10mg - plus all the other stuff!!

I received no examination or any other advice.

What happens when you see your Consultant? Is it what you expect and/or hope for? Do you have any suggestions?

Many thanks.

 

[sam101360]

Hi:

I am sorry you had such a dissapointing visit. I am not sure where you are, however I would suggest that you look for a new Rhumatologist.

You should never have to put up with being ignored and not having your issues addressed. Especially if you have issues with medications and are told to raise the dose anyway.

Dr's like this just make me angry...I wish someone would make them take meds that have some of the side effects ours do and then not listen to them when they have issues...maybe if they puked or got headaches from medications they would have more empathy for us.

Best of luck - Stephanie

 

[Smile Of Life]

Hi Phlox,
I started with an NHS rheumatologist in Surrey who made loads of mistakes. He also ignored me when I tried to get in contact with him over my intense pain. So I asked to change. Number 2 had no speciality in lupus and scared me with ommissions and strange irrelevant tests. Number 3 was a private guy who worried more about the clock and his expensive ties than answering my questions or helping me.

So I asked my GP to put together a list of specialists for me to choose who to transfer to. She understood and was more than happy. I chose the Lupus Unit at St Thomas' in London. People from all over the country go there. After intial consults you'll only see them once a year (you use your GP in between).

I have had quick and effective results from St Thomas, turning me from a cripple to having a near normal life in 2 visits, Worth trying if you can travel from Cornwall. If you can't, ask your GP to refer you to another rheumatologist. You do have the right to do this. You could do some research on ones in your local area to see their specialities.
Good luck

 

[greenhaggis]

HI there,

There is no reason why you cant phone your specialists secretary and explain that you are feeling no better!

I do this with my specialist and get interim care between the scheduled appointments.

Remember in the UK the medical profession work for you and you can contact them by phone and fax, just be assertive.

If this fails then its up to you to enlist your GP in contacting the specialist for more help!

Going to St Thoms is good advice, but although everyone in the British Isles has the right to be referred local PCTs don't generally agree to the funding of this service. Don't let that stop you asking your GP for the referral though, but if refused you can still go privately to the London Bridge Hospital.

 

[onetay]

Sometimes we think our doctors can read our minds or they think we know what they are thinking. It is a lack of cummunication between us and them. You should of asked why he was upping the plaqs and remind him that it does cause you migraines everyday. He should have that in your chart but they do see a lot of people everyday. It is not too late to call your doctor on the next business day and ask these and other questions.

I find that I have to remind my doctor from time to time of things only because I see him like ever 3-6 months, and for the most part have not had a lot of complains for him to remember me by. I forgive him for this as he is only human not more and not less. My rhuemy thinks unless I ask question I understand what and why he is doing things which is fine but he also stops in his tracks when I do have questions now as we have had words and he knows that I am apart of my treatment now.

It is hard to think of questions when you get surprised with treatment. It is ok to call them up when you do have questions that come to mind after your appointment, at least for my doctors it is.

I am not sure this helped you very much but I do hope that you call your doctor with your concerns and questions before changing your treatment. Feel better sooner.